Home Again, Home Again

           Huzzah.  Feisty Pants is home. She should have been home Saturday but instead was discharged Monday.   We had a doctor who didn't know FP very well covering for her pediatrician for the weekend.  New doctors are almost always scared silly by Feisty Pants.  Some take one look a her and want to immediately transfer her to a larger hospital.  Some, just want her to stay put where they can watch her sat rates and worry.  Which is why I want make this post about something people don't always tell you when you are first learning the ropes of raising a special needs child.

          So first things first- look in the mirror and repeat after me.  "I AM THE (insert title- mommy, daddy, guardian, whatever) AND I AM IN CHARGE."  Do that a lot.   Do it until you do it in your sleep. You are going to need to remind people of it.   A lot.   When dealing with schools, medical profession, insurance people, etc, you will have to gently point this out. Sometimes by shouting.  It's not that anyone is trying to ignore you.  But you will be dealing institutions and bureaucracy.  The problem with that is people who work within such frameworks get used to thinking along certain lines.  They are not paid to think outside the box, as it were.

             Next, find a central person within each framework that you trust and with whom you have good communication with.  In the case of dealing with the medical profession, get a good primary care doc and  a few good specialists.   If for any reason the fit is not right for you, get a new one.   We've gone through lots a specialists and hospitals with Feisty Pants. (Eight hospitals, I think.)  Some doctors were terrible. Some were good, but not a good fit personality wise.  These are working partners for you.  Don't settle if you are in any way not comfortable. Don't worry about replacing anyone. It's not personal- it's work.  Raising your kids is one of the jobs you do every day.    And with a special needs child, familiarity is important.  Especially in more complicated cases.  That was our problem this weekend.  The doctor, who was a good doctor and with whom we probably develop a good working relationship with, was new to Feisty Pants's care.  So, she didn't know her and she didn't know us.  We could have been terrible parents or simply really stupid ones.  FP is complicated.  So to err on the side of caution, the doctor kept her a little while longer.

               But nevermind.  What matters is she's home.  So, she is home and back to school.  Happily bossing us all around and creating havoc and mayhem with the new cohort.  And the new cohort is happily in love with Feisty Pants and only wants to be near her (until feeding time.)  I smell a conspiracy, but what the heck.  How much chaos can a combined weight of 75 lbs of adorable cause in the long run?